Is Fibromyalgia (Truly) Different for Everyone?

So I often hear others say “Fibromyalgia is different for everyone” to preface that common conclusion they make next (that I’ve discussed at length in my last two posts) “Different things work for different people”.

And I always get the sense that there is this general feeling that the fibromyalgia journey we each get is some willy-nilly luck of the draw kind of thing that befalls us.

And sure, there’s likely some degree of that luck of the draw stuff, but what if there’s something else at play here too?

Because I wonder…is fibromyalgia TRULY different for everyone?

Or is it the same basic underlying causes and triggers driving it for everyone…BUT is everyone DOING DIFFERENT THINGS and thus MAKING THEIR FIBROMYALGIA JOURNEYS DIFFERENT?

 So let me explain.

I’ve long felt that my own fibromyalgia journey would be so different, without a doubt, if I had taken a different route, if I had not almost immediately reactivated my proactive “combat mode” that I had discovered long ago during a previous chronic illness, whereby “I would try doing anything I could do to feel as healthy as possible in every other way”.

I was just trying to build up the good, to feel as good as possible and have as much energy as possible…to outweigh the bad (of fibromyalgia) as much as possible. And it has worked far beyond what I ever could have expected. It has boosted my overall health and immune system so much so, that it’s kept me functional over the years and even (unexpectedly) set me on a path of accelerating improvement!

(Not that I don’t think anyone can adopt my approach AT ANY TIME during their fibromyalgia journey and begin to reap the same benefits…I definitely one hundred percent do!)

But keeping functional in our lives…wow, that’s the holy grail of fibromyalgia, isn’t it?

Which leads me to another thing I think of when I reflect on the path of my fibromyalgia journey. I often ponder what my journey would have been like if I had not been forced to stay OUT OF BED, to stay UP and MOVING, to keep living my life to raise my three kids. I’m not sure I would ever have been compelled to learn that fine line balance between pushing and resting (pacing I guess) that is so key to limiting fibromyalgia’s grasp on our lives and keeping…functional.

So I wonder…if I had had the chance to stay in bed all those days my body seemed to beg me to, would my path have been completely different? For after all these years I am fairly certain that keeping moving and living (and pacing!) has ended up being the absolute best prescription for keeping FUNCTIONAL all along the way.

So as I discussed in a previous post, between my “combat mode” approach and my hard-earned pacing prowess, I’ve managed to achieve and sustain a level of symptoms that I am fine living with, that I can still function in my life with, allowing me to stay off ongoing medications.

Which brings me to the next thing I wonder about at times…if I had taken medications and not been forced to trial and error gradually figure out how to minimize my symptoms in A DIFFERENT WAY…by confronting and dealing with the UNDERLYING FACTORS AND TRIGGERS DRIVING MY FIBROMYALGIA on a daily basis…I wonder…would I be on the same journey now?

Because I’ve come to realize that UNDERSTANDING WHAT MY TRIGGERS ARE and LEARNING HOW TO MINIMIZE THEM AS MUCH AS POSSIBLE has been key to making staying out of bed a whole lot easier to do(!)…AND key to keeping functional all along the way…and still very much is, over eighteen years later…and I suspect it always will be.

And speaking of medications, I’ve talked at length about what I know about them (nothing!) in a previous post, and whether someone makes medications part of their fibromyalgia journey or not, of course that’s a personal decision based on each person’s individual circumstances…of course. But there are a few things I’ve wondered over the years.

Now, I’ve admitted I don’t know a heck of a lot about taking medications for fibromyalgia, but…I do have a lot of experience with NOT taking them…going on nineteen years of experience of living fibromyalgia without any ongoing medications.

So I may be wrong, but it seems to me that medications for fibromyalgia serve as temporary fixes, for symptoms in the moment…they bring welcome relief for the battle at hand.

 But something I’ve learned to consider and to be careful of, is that my temporary fix is not setting my overall fight back…that I am not winning a battle at the expense of losing the war…at the expense of the journey.

Sleeping pills may be a prime example of this. Many things will knock you out and make you sleep but sleep experts will tell you (as in the book THE SLEEP SOLUTION that I just featured in my last book share post) that “Sedation and sleep are not always the same thing.”. And these experts say that while one is sedated (by sleeping pills), making them FEEL like the are sleeping, their sleep cycles, in fact, are often not cycling through the appropriate stages leaving them lacking in the robust amount of deep sleep that we all need, to gain all the restorative benefits that go with it. Restorative sleep…PING…key for all of us, but particularly those of us with fibromyalgia!

So the sleeping pills fool one into thinking that they are getting sleep, but that is not what the experts call sleep, and on an ongoing basis, I’m not sure it’s what we need to win the war…in fact, long term, I wonder…maybe it’s making one worse. Because while one is being lulled into this false sense that they are getting good sleep, they are likely not continuing to search to find out what they truly need to be working on to get actual restorative sleep. And as time goes on, their body goes longer and longer deprived of restorative sleep and all the much-needed benefits that go with it.

Not to mention (the sleep expert says) “the fact that a growing body of evidence is potentially linking some of these pills to memory loss, confusion, or even dementia with prolonged use.” Yikes! It’s not like we don’t have enough of that already! (fibro fog!)

(And when you consider I even believe it may be the restorative sleep I’ve been getting since I fixed my sleep that has finally put my journey on a gradual healing path, possibly even a recovery path…well, I’ll just say please read my previous book share post if any of my thoughts about sleep resonate with you and if you’d like to learn what sleep experts actually recommend to help you sleep.)

And really, I sometimes wonder if sleeping pills may not be the only medication that while working as a temporary fix for fibromyalgia symptoms, could be actually impeding one’s long-term battle with fibromyalgia.

I’ve gradually come to believe that would have been the case for me personally, had I taken ANY ongoing medications for my fibromyalgia…that my long-term battle with fibromyalgia would have been hindered more than helped. As I said in an earlier post, “I came to think (it seemed to me) that perhaps medication would allow me to keep doing the “wrong things” that were stressing my body by providing a band-aid for the resulting symptoms.”

What I meant by that was that I know myself and I know that if I took medications to alleviate my symptoms, I would end up overdoing it (even more than I already do at times!).

Because medications take away the symptoms. (That is the whole point of them, right?)

BUT…my symptoms are what guide me.

They signal to me that I’m not managing my triggers well, maybe I’m allowing myself to be too stressed or I’m not getting enough restorative sleep. They signal when I need to address these stresses on my system and get back on track. And when I AM able to get the symptoms to subside again, on their own, by getting back on track, that signals to me that I’ve been successful at alleviating the (over)stress on my system.

Had I been taking meds, I know I would have pushed myself too hard, and very likely made myself worse. The meds would have allowed me to push past my limits, to keep doing the “wrong things” that were putting more stress on my fibromyalgia body and brain than they could handle.

But I would never have known this, with the meds taking my symptoms away, because the symptoms are the only way I knew I was overdoing it. Does that make sense?

(Not to mention, adding in the additional confusion that I’m not sure I would even know which are side effects of the medication(s) and which are actually (triggered) fibromyalgia symptoms indicating I need to pull back within my limits again…as it is, it took me years of muddling through, monitoring my symptoms to figure out my key triggers, without any medication side effects thrown into the mix!)

So as I said in the previous post, this “led me to the next thought…what if I keep doing these “wrong things”? I wonder… if they are putting stress on my body…and I find ways to keep doing them instead of addressing them…what then? Will my body break down even further, and then maybe I would have something even worse to deal with?”

Again, obviously the medications decision is a personal one, and at some point I may be forced to make a different decision than I have to date, but I wanted to put my thoughts out there for others to consider within the context of their own circumstances in case anyone is trying to make this decision.

The only other thing I would say is I’ve had the experience of agreeing to go on a medication, for a previous chronic illness, that I didn’t research enough. I was young and new at navigating the medical system and I completely trusted my doctor. Much later I discovered it to be a controversial drug and I’ve heard that some with fibromyalgia even feel it was the cause of their fibromyalgia. To this day I honestly don’t know if it really helped me or really harmed me or both, but it’s water under the bridge for me at this point.

But I know for sure, if I should at some point feel it necessary to begin taking any ongoing medications for my fibromyalgia, I will be researching their short-term side effects and long-term consequences as much as humanly possible!

So yes, now that I think about it, it’s probably a good guideline to use to assess ANY potential fibromyalgia treatment…its short-term side effects of course, but maybe even more critical, its LONG-TERM CONSEQUENCES. Because from what I’ve experienced, fibromyalgia IS a LONG-TERM BATTLE, so whatever path we choose, either the benefits of, or possibly some unfortunate consequences of it, will be catching up with us somewhere down the road.

Because it does seem to me that maybe fibromyalgia’s like a lot of things in life…maybe we CAN choose our own path to some degree…maybe we CAN forge our own journey…maybe we CAN even turn it around at any time and reforge our journey!

Sure, there’s some luck of the draw in there…and of course there are so many factors affecting the course of an illness, certainly unique to each individual and their circumstances…of course.

But I always want to think I can have a say in the course of my life and while fibromyalgia may end up different for everyone, I certainly feel like I’ve had some say in the fibromyalgia path I’ve ended up on. And I plan to continue to have some say in it.

And what I know is real is I genuinely believe all of us can have some say in determining the fibromyalgia journeys we end up on.

Maybe fibromyalgia doesn’t have to be so different for everyone, maybe we can ALL be functioning…and living…and at times even thriving in our fibromyalgia lives!

Maybe…even you can.